autism self injurious behavior

5 Possible Causes of Autism Self-Injurious Behavior

autism self injurious behavior

Both of my teens experience significant gastrointestinal issues as part of their autism. I was out running errands with my daughter (who just turned 19! How did this happen?!) and she had severe cramping from abnormal cycles and anxiety. We had no access to pain relief meds; then I looked over and saw her punching and pushing on her stomach. She said it actually felt better… and admitted this wasn’t the first time she’s hit herself for pain relief.

She said, “I wonder if this is why some people with autism hurt themselves, to actually relieve the pain.” She told me that the combination of the pressure and the feeling of doing something about her pain made her feel better.

I started to wonder exactly why self-injurious behaviors occur. On scene it presents like a behavioral issue that must be dealt with swiftly. But there is definitely more to it, and understanding it can help us help our patients more effectively.

What is self-injurious behavior?

In the mental health industry, the definition of self-injury (also termed self-mutilation or self-abuse) is defined as the deliberate, repetitive, impulsive, non-lethal harming of oneself. It often includes cutting and scratching. There is typically a deep-rooted psychological history that accompanies this type of self-injury.

With autism, it can look a little different. The most common forms of these behaviors include: head banging, hand biting, hair pulling, and excessive scratching. According to the Autism Research Institute, there are many possible reasons why a person may engage in self-injurious behavior, ranging from biochemical to their social environment.

These are the top 5 tangible reasons that will help you in the field.

Chemical “messengers”

There is a suggested relationship between the levels of neurotransmitters and self-injurious behavior, in that self-injury may increase the production and release of endorphins in the brain. As a result, a person experiences an anesthesia-like effect, allowing them to no longer feel pain while engaging in the behavior (like my daughter punching her stomach). The release of endorphins also may provide the individual with a euphoric-like feeling.

Seizures

Approximately 1/3 of people with autism have an accompanying seizure disorder. Self-injurious behavior has also been associated with seizure activity in the frontal and temporal lobes, exhibiting behaviors such as head banging, slapping the ears, hand biting, and scratching the face or arms. It is critical to realize seizure-related self-injurious behavior is involuntary and may require restraint. Seizures may typically begin when an autistic child reaches puberty.

Pain

Another reason for this behavior, once again as in my daughter’s case, is simply to reduce pain. There is growing evidence that pain associated with gastrointestinal problems and inner ear infections may be associated with self-injury. The behavior may dampen the pain, but also may “gate” it to another area of the body, serving as a distraction.

Sensory Issues

Self-injury can be a defense against an overwhelming sensory environment. Just being in a public place can be physically painful for someone with sensory processing issues, as their senses are often magnified and they struggle with the filtering of background noise. They may hear everything – times 10 – in their face at all times. And that’s just ONE of the senses – add to that sensitivity to lights, smells and more.

Excessive scratching or biting may be an extreme form of stimming, which helps “reset” the nervous system. An under-active nervous system SEEKS input, so some self-injurious behavior is an attempt to placate their body’s need for sensory stimulation.

Frustration

This behavior can also be a result of sheer frustration. An autistic person that struggles with communication skills becomes frustrated because of their lack of understanding of what was said (poor receptive communication) or because the parent or caretaker does not understand a need they have attempted to communicate. Imagine repeatedly not being able to effectively express your needs to the people responsible for meeting them.

In Summary

As I share in my autism training for emergency responders, self-injurious behavior is most typically rooted in pain. As a parent, instead of stopping the behavior, you can sometimes provide safety and cushioning. In the field, we rarely have that option. Safety is an issue and the behavior must be controlled.

Being aware of multiple reasons for a behavior (as opposed to perceived non-compliance) allows us to look for a physical or medical cause and address that first and foremost, which contributes to the safety of everyone involved.

Over to you…

Have you encountered self-injurious behavior on a call? How was it handled? Share by commenting below!

autism echolalia

Autism Tips for Emergency Responders: Stop Echoing Me!

autism echolaliaHave you ever had that one annoying sibling when you were growing up that would torture you all afternoon by repeating EVERY. SINGLE. THING. YOU. SAID? No matter what you did, you couldn’t get them to break. It was like Chinese water torture.

Whether an autistic person is verbal or nonverbal, you may encounter the same behavior on a scene… from an adult. You ask them for their name, some ID, and other typical questions, and all you get back are echoes of what you’re asking. What’s your first reaction? “This smart *** is being non-compliant! WTH!”

I assure you, even if you witnessed them speaking in complete sentences prior to your standard questioning, the anxiety and distress an autistic person experiences during an encounter with public safety can result in the loss of their ability to articulate at all.

It may appear that they are being disrespectful but they are NOT. They are trying to communicate the only way they know how. It’s called echolalia.

What Exactly is Echolalia?

Echolalia is the repetition of phrases, words or parts of words.  Naturally, younger children, while learning to talk, will “parrot” what they hear as part of the process. That’s not what I’m referring to.

There are two types of echolalia. You may be on scene with a teen or adult that is repeating back everything you are asking them instead of giving you direct answers. This is called “Immediate Echolalia.” For example, if you say, “Do you have any ID?” the person may immediately reply with, “Do you have any ID?” It will typically be in the same tone and inflection that you used.

By repeating back words, the person is actually demonstrating that they can hear you accurately, but may not immediately comprehend what you are saying.

According to friendshipcircle.org, some adults with autism explain that immediate echolalia is a way of communicating, “I heard what you said, and I’m still processing it.”  Immediate echolalia is an attempt to remain in a conversation and give an on-topic answer, before the meaning of the conversation is fully grasped.

How do you support increased comprehension? Use visual aids, and involve as many senses as possible, but be careful not to overload them with too much sensory input. Also be aware that if you are offering two choices and the person verbalizes the second choice, they may be REPEATING the last thing you said, not actually answering your question or making the choice.

Delayed Echolalia

Back to the scene, you may ask, “Do you have any ID?” and the person may respond, “Cheeseburger,” or a punchline from a joke or TV show. This is called “Delayed Echolalia.” A person with autism typically likes to memorize and recite catch phrases, verses, portions of historical speeches, or funny scenes from their favorite commercial or movie. Unlike a neurotypical person that will retrieve a funny one-liner from a movie and throw it out for humorous effect in context, delayed echolalia will rarely be relevant to the conversation at all.

My son seems to have a new catch phrase almost monthly. We’ll be walking the dogs together and a neighbor will wave and say, “How are you?” My son might reply, “I am a person.” because that’s what he’s been saying all month, regardless of what the conversation entails. It will be his answer to everything until he finds a new catch phrase to repeat.

You should hear the variety of responses we get to that ;)

Sometimes delayed echolalia occurs because it’s calming the person’s nervous system, a form of self-stimulatory behavior. Typically, however, it stems from wanting to participate in conversation but being unable to fully understand the content of what’s being discussed. 

As easy as it is to assume non-compliance, it’s critical to realize that both versions of echolalia represent a desire for inclusion in conversation.

Share in the comments below if you’ve experienced echolalia with anyone before!

far from heaven

I’m an Autistic Adult… and I’m in Purgatory

far from heavenI’m 18. I graduated high school last July. I’m “high functioning” enough to be able to take care of my brother and myself when my mom is on night shift on the ambulance. I can dress myself (although not according to society’s “fashion” standards), I keep up with hygiene, sleep and wake on a self-imposed schedule, participate in online communities, cook for myself, help out around the house, and manage my own bank account. No, I haven’t learned how to drive yet. No, I haven’t applied for college. No, I don’t yet have a job but I’m looking for one. It really has to be something quiet and not too overwhelming, though, because there are currently no resources or tools for me to learn how to manage all the challenges I now face in the adult world.

Autism awareness and diagnoses have risen dramatically… for young children. In elementary school my brother had access to all sorts of special accommodations and therapies. Unfortunately, being a girl, I actually didn’t receive a diagnosis until I was 17, because autism presents very differently in girls.

From infancy throughout the schooling years, interventions are readily available. But what happens when you turn 18? Where are the resources? Who teaches us how to interview for jobs? Buy a car without getting ripped off? Balance a checkbook? Pick the right auto insurance? Do taxes? Grocery shop and plan meals? Go on a date? Figure out the best cell phone plan? Find friends?

Society seems to think one magically “grows out of autism” once they reach adulthood, especially if you’re considered “high functioning.” My symptoms are seen as “not really severe” so I don’t qualify for any kind of adult support…

… yet I’m not entirely sure how qualified and ready I am to “adult” right now. Of course my mom works with me on some of these things, I don’t want to make it sound like she’s not parenting me and teaching me about life. But being a young adult with autism, trying to figure out the next steps to life presents with far more struggles than simple social skills deficits.

What is “High Functioning Autism?”

According to LoveToKnow.com, the term high functioning autism, or HFA, is used to describe individuals who meet the criteria for a diagnosis of autism, yet show no cognitive delays, and are able to speak, read, and write, as well as have IQ scores of average or above. Those with HFA do suffer difficulties in communication, language, and social interaction typical of autism, as well as repetitive behaviors and narrow interests associated with the disorder. Abstract language concepts, such as irony and humor may well be beyond the comprehension of adults with high functioning autism.

While with the right support we can manage independent and successful careers, marriages, and social lives, it can still be difficult to blend into the mainstream world. Crowds, even small ones, can activate sensory overload for me and make me shut down. Fluorescent lights, smells, or certain combinations of sounds make my nervous system crawl with pain and discomfort. I have extreme anxiety dealing with the public.

Social awkwardness and communication issues can make me highly misunderstood and even considered rude. Inability to maintain eye contact during conversation can cost a job interview or friendship, as it is often misinterpreted as dishonest or lacking interest. Maybe I pass an interview and secure a decent job, but the challenges don’t stop there. Workplace camaraderie is terra incognita for many high functioning autistic adults. Small talk and sarcastic humor go over my head, and I’ve been known to not have a filter when it comes to appropriate thoughts to verbalize in conversation. Don’t even get me started on not understanding body language or non-verbal cues and facial expressions.

I’ve been accused of being odd, serious, quiet and aloof, when really I’m severely over-analyzing a simple response to “How are you?”

Being high functioning, I often feel that even the autism community discounts my struggles, as my deficits are compared to the hardships faced by the profoundly disabled. So I feel isolated from mainstream society, yet have trouble finding resources for my issues. Less severe symptoms mean I am denied applications for medical and psychological assistance.

I applaud all the awareness and resources put forth in general when it comes to autism, but there is a long road ahead of us still.

***

For tips on recognizing adults with autism on the scene of a crime, fire, medical call or disaster, check out this article, Trix Are for Kids, Autism is Not (Only)!

autism and violence

Autism Tips for Emergency Responders: Autism and Violence

autism and violenceI often get asked during my autism trainings for first responders whether or not it is more likely to see someone with autism using drugs and alcohol, specifically when I describe sensory issues and what it’s like to experience them. This often leads to a discussion on autism and violence.

Are autistic people more prone to violence?

When you look at two highly publicized incidents – the 2007 Virginia Tech campus shooting and the 2012 Newtown, Connecticut, school massacre – there is a perception by the public that persons with autism are predisposed to violent behavior. Yet, neither the DSM5 definition of autism nor follow-up studies have ever illustrated an increased prevalence of violent crime among persons with ASD.

So how do you explain violence and offending behavior? Let’s look at separating actual violent crime from aggressive behavior. In autistic individuals, a desire to communicate and/or the inability to recognize personal space might lead to inappropriate touching or pushing. This is never intentional or malevolent behavior, whereas violent crime is typically deliberate, serious, and planned. It involves force or threat of force.

So when looking at a behavior, here are some ways to distinguish a violent criminal behavior from an aggressive autistic behavior.

Autistic Behavior 1: Making no attempt to conceal or justify the behavior.

When someone believes they’ve done nothing wrong, or doesn’t understand why something is not appropriate, they will not try to hide their behavior. In my experience, most people I have worked with on the autism spectrum are 100% honest and incapable of hiding any type of behavior or reason behind it (this makes it very easy to figure out “whodunit” in my household when something is broken or missing!).

Autistic Behavior 2: The behavior is related to the person’s obsession or special interest.

Rigid, restricted and repetitive interests begin in early childhood but do change over time. They also correlate with intelligence level: the higher the level of intelligence, the more sophisticated the level of fixation. These obsessions can “graduate” from Pokémon characters to computers, technology, and scientific experiments, including arson!

Autistic Behavior 3: The behavior is from misreading social cues.

According to an example on CurrentPsychiatry.com, a young man with ASD had been fired a few days after landing his first job selling used cars because he was “sexually harassing” his colleagues. When questioned, he said that he was only trying to be “friendly” and “practicing his social skills.”

Autistic Behavior 4: The offending behavior is a result of a comorbid diagnosis.

Autism can present with several comorbid conditions, such as schizophrenia, ADHD, depression, psychosis or seizure disorder. It is critical to look for an underlying cause. In higher-functioning persons with ASD, violent crime is almost always precipitated by a comorbid psychiatric disorder.

Most people with ASD are neither violent nor criminal. There is a need to educate the criminal justice system regarding the special challenges faced by persons with autism. A defendant with autism has no physical signs of disability and is often misunderstood and mistreated.

What to do when encountering violent behavior and autism is suspected

  • Confirm the ASD diagnosis based on developmental history and any training you have received
  • Screen for comorbid psychiatric and medical disorders, including depression, psychosis, and seizure disorder
  • Carefully examine the circumstances surrounding the offending behavior

During interviews, remember to allow for more time. When you think you’ve done that sufficiently, double it ;) Also try to understand the person’s communication style before asking the critical questions, and remember that lack of eye contact, vague answers and changing the subject can be typical autism behaviors and not evidence of guilt.

 

autism personal space

Autism: Don’t Stand So Close to Me

autism personal spacePicture this: you respond to a call for a 26 y/o male “not acting right” (that’s about the extent of information WE get from dispatch, anyway ;) ). You arrive on scene and are immediately approached by a 5’9” 230-lb male who won’t make eye contact or respond to his name. He proceeds to get too close, won’t slow down or stop on your command, and maybe even reaches out and tries to touch your arm.

As an EMS provider or law enforcement officer, this situation would immediately be perceived as an aggressive threat and could go south very fast.

Regarding body proximity, responders are often faced with the reactionary gap – the human factors formula that compares action vs. reaction – when assessing situations like this on scene. The closer an assailant is to you, the less time you have to defensively react to any aggressive behaviors or actions.

When an emergency responder experiences a threat, it takes on average .58 seconds to assess and determine if the threat is real, then an additional .56 to 1.0 seconds to make a response decision. We as providers have to fall upon one of five possible responses to threat: defend, disengage, posture, hyper-vigilance or submission. I’m sure you can figure out which one most public safety professionals embrace.

So what if the person was autistic? What if they didn’t understand where their body ends and space begins? What if body proximity, spatial awareness and proprioceptive dysfunction came into play and they had no malicious intent and no idea their actions were perceived as threatening?

Does that mean you should leave yourself unprotected or allow these behaviors on scene? Of course not. But let me explain.

There are four main categories of proxemics:

  • Intimate Distance (touching to 2 ft)
  • Personal Distance (2-4 ft)
  • Social Distance (4-12 ft)
  • Public Distance (>12 ft)

Although seemingly effortless to most people, judging the right distance to stand from someone is a complex and dynamic skill. It can depend on many factors, such as your relationship to the other person, your age, gender, emotions, and culture. Your body proximity is a form of nonverbal communication that, in turn, says a lot to another person.  Standing too close to someone can absolutely communicate aggression.

Why This Is an Issue

The Autism Genetic Resource Exchange (AGRE) compared the scores of 766 children with autism against 766 of their unaffected brothers and sisters on a questionnaire of autistic social behaviors. An overwhelming 79 percent of autistic children “were less aware of being too close and more prone to personal space invasions” than their neurotypical siblings.  Though it seemed to improve with age, it continued to affect teenagers and young adults. Those with spatial issues were more likely to:

  • Stand too close to others
  • Touch others in an unusual or inappropriate way
  • Walk in between two people who are talking
  • Be unaware they are talking too loudly or making too much noise

This behavior is often done on automatic pilot and not self-monitored.

Proprioception and Spatial Awareness

Proprioception refers to the sensory input and feedback that tells us about movement and body position. “Receptors” are located within our muscles, joints, ligaments, tendons, and connective tissues.

If this proprioceptive sense is not receiving or interpreting input correctly it is referred to as PROPRIOCEPTIVE DYSFUNCTION.

Spatial awareness is part of our overall perception. Since perception is the organization and interpretation of sensory stimuli from our environment, autistic people would need to have adequate body awareness to be able to form the relationship of their body with the stimuli and objects within that space.

My son has tremendous struggles when it comes to this. Not only does he have to constantly touch the wall when walking in public, he perpetually “hovers,” stands too close to people, touches them without invitation, and even crashes into them. This is due to his nervous system craving proprioceptive input and his inability to fully perceive where he is in relationship to his surroundings. At home, we use a hula-hoop to continually demonstrate personal space. While he has made significant progress, it is something we must address daily.

What scares me is that my son is a BIG child. His simple lack of spatial awareness might cause him to be severely injured or incapacitated if his behaviors are misinterpreted, especially during a heated situation or crisis.

What Can You Do On Scene?

If you identify someone as autistic on scene, whether by the family’s information or from the tools you learned in my autism training, try to keep this information in the back of your mind during your scene size up. Know there is a possibility of someone being a ‘space invader’ and that it might not be an aggressive or threatening action.

I am not telling you to put your guard down and allow someone into your personal space AT ALL. But awareness goes a long way. When you start putting the picture together that someone might have spatial awareness issues or proprioception dysfunction, try putting your arm out and stating, “Stay at arm’s length.” Use clear, concise phrases that have only one meaning, such as “Stop there” while holding your arm out.

The combination of the visual cue and clear commands could truly go a long way in stopping a situation from being misinterpreted and rapidly escalating out of control.

autism anxiety

Autism Anxiety: It’s Not What You Think

autism anxietyAs an emergency responder, I’m sure you’ve had “that call” a bunch of times… it comes in as heart attack or chest pain, and you drive lights and sirens to the call location only to find out your patient is simply having an anxiety attack. Sure, you do your job and tell them to take some deep breaths, you assure them they are safe, maybe even call a family member, and get a refusal. All the while in your head, you label it a BS call, or “status dramaticus.”

Of course I am not belittling or dismissing the fact that generalized anxiety disorder is real in any way; it is a recognized disorder and it affects people greatly. What I DO want to talk about it autism-related anxiety, and how it affects those who experience it.

My 18 year-old daughter has anxiety. It is a huge part of how her autism manifests. It’s taken me some time to truly understand the things she struggles with.

To be completely raw and brutally honest, there are days – even now – where it’s hard for me to put myself in her shoes. This month I’ve worked a ton of overtime shifts, operating on two hours of sleep per day if I’m lucky, and still couldn’t pay some of our bills. I’m managing a special needs household on my own and the more I work, the more I watch my “kingdom” spiral out of control as I fall behind on the day-to-day tasks that are important to our survival. So when I look over at my daughter and she’s completely melting down over something I consider a bit trivial, there is a part of me that thinks, “Really? Over this? What if she had REAL responsibilities, like a typical 18 year-old? What if she were amid choosing a college, taking exams, working, experiencing peer pressure, trying alcohol, or was in a relationship? How the hell would she handle THAT if this (minor) thing is completely destroying her right now?”

There is so much more to it than that.  

Of course, I’m human. I worry that I am coddling her or sheltering her too much. I worry that she won’t become a functioning member of society. But then I see her face a lot of her anxiety head on, with the attitude of a warrior, and I watch her make great strides overcoming some of her worst attacks without anyone telling her what to do… and I know she is where she needs to be right now. Especially with the help of my meltdown management breakthrough technique.

So what is autism anxiety? How is it different?

For one, autism anxiety is more physiological than psychological. When anxiety kicks in, it’s not necessarily triggered by stressful thoughts. Sometimes, it’s just there, like a nagging toddler that constantly follows you around and tugs at your apron strings, demanding attention. Aside from the typical rapid heart beat and dry mouth, it can cause an array of GI issues, from nausea and vomiting and diarrhea to digestion issues and acid reflux. It can manifest as joint pain, muscle aches and circulation issues, causing things like Raynaud’s disease. It can make your whole body shake uncontrollably for no logical reason whatsoever. Being in fight or flight mode long-term is very stressful on the body. Being unable to logically control it feels like pure torture.

The other day, my daughter told me it was very “loud and crowded” in her head. Like that scene in Bruce Almighty where Jim Carrey starts to hear everyone’s prayers in his head at the same time, my daughter hears all her thoughts. Only they’re not so nice. They constantly tell her she’s not okay, there are things to worry about, things to be scared of. They bring up every line of every conversation she’s had and tell her how she should have said things differently. They remind her of every embarrassing moment of every childhood event, relentlessly. It’s like a constant soundtrack in her head, and she has to learn to tune it out just to function.

That’s just the thoughts. Then the physical symptoms kick in. The nausea, the muscle cramps, the trembling… for her, it feels like she’s in a tiny glass case and can feel her anxiety climbing up her body and suffocating her. And there’s no escape. It doesn’t matter how logically I approach her fears or thoughts, she cannot control them. She can’t simply “snap out of it.” Her brain does not care if there is a real threat or not; her body reacts as if there is. And it goes downhill from there.

Eventually, if she cannot gain control over it when it’s happening, she will reach the point of complete shutdown, which can include paralysis, difficulty breathing and the loss of ability to speak. She describes this as an overload. There are so many thoughts and physical sensations hitting her simultaneously that it becomes overwhelming. In this state, if I ask her, “What’s wrong?” she feels like all of her thoughts form a huge, heavy mass and it’s just too much. She can’t name or articulate any one thing.

These are just the day-to-day experiences, not even touching on anxiety that stems from social situations and having to interact with others.

Now let’s think about at adding an emergency situation to the mix. In my autism training program for emergency responders, I talk about how it’s more difficult to identify autism in females. Autism anxiety can be a huge clue.

So what should you do on scene when you recognize this type of paralyzing anxiety in a patient with autism? How is it best handled?

Let’s start with what NOT to do:

  • DO NOT become angry or raise your voice
  • DO NOT restrain unless absolutely necessary
  • DO NOT tell someone to simply “snap out of it”
  • DO NOT say, “Use your words” to someone. As the brain escalates, the ability to be rational and articulate diminishes greatly.
  • Avoid moving someone until they calm down, unless they are in immediate danger or the current location/setting is contributing to the escalation.
  • Remove unneeded bystanders – including additional personnel
  • Do NOT turn it into a power struggle

What SHOULD you do?

All efforts should be made to prevent a meltdown if possible. Remember, you are not “giving in” to negative behavior; you are literally throwing a lifeline to someone who is unraveling neurologically

  • DO turn off lights and sirens if possible
  • DO give space to allow the person to self calm if they are able
  • DO allow one familiar family member or caregiver to remain with them
  • DO respond patiently and compassionately
  • DO offer choices
  • DO provide a pen and paper to see if they can write down their needs
  • DO keep the individual safe from harming him or herself

Being an EMT means that I have a responsibility to my community to provide the best patient care I can, including recognizing and helping those with special needs that struggle with a variety of disorders and symptoms. Being an autism parent means that I must continually strive to find a balance between honoring and supporting my children’s struggles and giving them tools to help them be the very best version of themselves and succeed as an adult.

Autism anxiety is a tough thing for me to help my daughter manage… but any time I get overwhelmed with her meltdowns I stop and imagine what it must feel like for her. Seeking education and providing compassion and empathy will take you a long way as an autism parent OR as an emergency responder. Or in my case, both :)

 

autism_vs_aspergers

Autism Tips for Emergency Responders: Autism vs. Asperger Syndrome

autism_vs_aspergers I often get asked, “What’s the difference between autism and Asperger’s? Are they both considered autism? Are they the same thing? And what the heck is PDD-NOS?”

Just when I had a handle on everything, the Diagnostic and Statistical Manual version 5 (DSM-5) went and changed the diagnostic criteria! Here is what I know, in a (large, drawn out) nutshell:

With the May 2013 publication of the DSM-5 diagnostic manual, all autism disorders were merged into one umbrella diagnosis of autism spectrum disorder (ASD). They were previously recognized as distinct subtypes, including autism, Asperger Syndrome, Childhood Disintegrative Disorder and Pervasive Developmental Disorder-Not Otherwise Specified (PDD-NOS).

Both autism and ASD are now considered general terms for a group of complex disorders of brain development. These disorders are characterized, in varying degrees, by:

Communication and Social Interaction

  • Deficits in social-emotional reciprocity, ranging from an abnormal social approach, to reduced sharing of interests or emotions, to failure to initiate or respond to social interactions.
  • Deficits in nonverbal communicative behaviors ranging from abnormalities in eye contact and body language, to deficits in understanding and use of gestures, to a total lack of facial expressions.
  • Deficits in developing, maintaining, and understanding relationships, from difficulties adjusting behavior to suit social contexts to difficulties in sharing imaginative play or in making friends.

Restricted, Repetitive Patterns of Behaviors

  • Using repetitive motor movements (simple motor stereotypies, lining up toys or flipping objects, echoing speech, idiosyncratic phrases).
  • Showing inflexible adherence to routines, or having ritualized patterns (extreme distress during small changes, difficulties with transitions, rigid thinking patterns, need to take same route every day).
  • Possessing fixated interests with abnormal intensity or focus (strong attachment to or preoccupation with unusual objects, excessive knowledge in a sole interest).
  • Being hyper- or hyposensitive to sensory input (apparent indifference to pain/temperature, adverse response to specific sounds or textures, excessive smelling or touching of objects, visual fascination with lights or movement)

Although the DSM-5 no longer recognizes Asperger Syndrome and PDD-NOS as separate diagnoses, it is still good to recognize some distinct characteristics of each, especially since anyone with a previous diagnosis of these means the terms are still in use.

Asperger Syndrome (AS) is a form of autism in which the individual has or had little to no language delay and an IQ in the average to high range, but has social and communication challenges. It was named for the Austrian pediatrician, Hans Asperger in 1944.

Dr. Asperger called children with AS “little professors” because of their ability to talk about their favorite subject in great detail. Common signs of Asperger Syndrome include social problems, vulnerability to sensory overload, clumsiness, and a tendency to take many figures of speech literally.

Many adults who were very bright children but never quite “fit in” socially realize later in life that they may have Asperger Syndrome.

Pervasive Developmental Delay-Not Otherwise Specified (PDD-NOS) was typically reserved for a child who displays some of the characteristics of autism or Asperger Syndrome but doesn’t quite match all the criteria. Often very young children who are identified with having PDD-NOS were later diagnosed with autism or AS when they were older.

What does all this mean for us in the field?

Not much! Honestly.

I perpetually tell responders that it truly is not our job to diagnose autism in the field. What we CAN do, is recognize some of the common signs and behaviors of autism to enable us to adapt our response to more effectively communicate and interact with someone on the spectrum that’s having a really hard time on the scene of a crime, medical call, fire or disaster. This will help us keep the situation as safe as possible and best meet the needs of autistic individuals that may soon escalate into a meltdown or crisis as a response to an overwhelming environment.

Even if we recognize a “classic” autism behavior, remember to first address and rule out all medical causes of that behavior! Don’t ignore life threats while tripping over labels and diagnostic terms.

image courtesy of freedigitalphotos.net

1 in 45 Children Now Diagnosed with Autism: Should We Be Worried?

image courtesy of freedigitalphotos.net

image courtesy of freedigitalphotos.net

It’s time to update my website, brochures and training materials again… according to the latest numbers released from the CDC this past Friday (the 13th!), 1 in 45 children in the United States has an autism spectrum disorder.

According to livescience.com, this new report is based on data collected during the yearly National Health Interview Survey, from interviews of parents about their children.

The CDC’s previous estimate (yes, I said estimate) put the rate at 1 in 68 children. Though this looks like another significant increase in a short amount of time, there are some other factors at play.

There is an increase in autism awareness now among parents and healthcare providers that was lacking in past years. Some kids were automatically labeled as having a developmental disability rather than being diagnosed with autism. There have also been recent changes in the diagnostic criteria and symptoms used to describe ASD.

As an autism diagnosis is becoming less and less of a stigma in our society and there has been an exponential increase in services and support, doctors are being more thorough and less likely to “under-diagnose.”

In this latest study, the way data was collected has also changed, which may play a role in the increased numbers. Putting the question about autism second in the parent surveys, before the question about other developmental delays, resulted in the data showing a higher prevalence rate for ASD and a lower prevalence rate for other developmental delays. The opposite seemed to occur in 2011 to 2013, when the questions were the other way around.

Though there is somewhat of a divide in the public opinion of increased number – broader diagnostic criteria versus food and environmental factors – most experts feel these latest results are probably a more accurate measurement of the true prevalence of autism.

My question is, are we even taking into account how many PARENTS are now getting a diagnosis of autism after their child’s diagnosis? I have seen this so much – parents who thought they were simply “quirky” or had other diagnoses are now putting the puzzle together for themselves and finding great relief in better understanding their sensitivities, thought processes and social struggles. What about all the females with autism that are either diagnosed in their late teens/early 20s or NOT AT ALL because their behaviors don’t fall under the “classic” signs of autism typically seen in males?

My guess is there are a lot of awesome NEURODIVERSE individuals walking around that have an autism spectrum disorder – our specialists, our innovative thinkers – that are changing the way our world works.

My favorite blog post from Stark Raving Mad Mommy is called “Little Specks of Autism.” She says, “More and more, I see it in myself, my family, strangers. Not full-blown autism; not something that hampers life to the point of needing intervention. Just specks of autism. Our anxiety, our OCD, our sensory issues, our weird selective hearing issues are all little specks of autism.”

Should the 1 in 45 worry us?

I don’t think it’s even important, honestly. As emergency responders, here’s what is:

  • Is your patient/victim/(even) perp having an overwhelming sensory response to his or her environment?
  • Are they experiencing communication difficulties?
  • Are they unable to look you in the eye when you’re speaking to them?
  • Can they process and understand exactly what you are asking of them or telling them?

If the answer is no to any of these, the next step should not be to fine-tune a diagnosis but to treat the person. We can try to recognize a challenging behavior not as someone who’s giving us a hard time, but someone who’s having a hard time. Whenever possible, using the methods I teach in my autism training, we can adapt or modify our response if it makes sense and the scene is safe for all involved.

weather and autism

Does Weather Affect Autistic Behaviors?

weather and autism Anyone in the Atlanta area can attest to how dreary and frustrating it’s been to wake up to recent days of endless rain. I feel like it’s been raining for months straight! Memes are starting to pop up on Facebook naming us Atlantis or Seattle, Georgia. Oh and the MUD! I have two huskies that go and sit in mud puddles in the back yard – you wouldn’t believe what my carpet and furniture looks like, despite daily cleanings.

But dreariness and carpet mud cakes are not the only side effects of bad weather. I’m hearing from parents and teachers that children have been especially wild, fidgety, irritable and aggressive during this endless bout of downpours. In fact, low pressure systems have long been linked to increased behavior problems in children. In my own household, I’m seeing its effects as well. My son is much more “in your face,” making increased noises, and treating almost every object in our living room as if it’s a soccer ball and he’s Pelé, going for the winning goal. My daughter has been extremely achy, moody and depressed. But then again, she’s 17. Isn’t this normal for a teenage girl?

What is barometric pressure?

Barometric pressure is the weight of the overlying air pressing down on the earth. It is also known as air pressure.   Low barometric pressure means the overlying air is rising, whereas high pressure means the overlying air is sinking. High barometric pressure supports sunny, clear, and favorable weather conditions. Low barometric pressure promotes rainy and cloudy weather conditions.

The Canadian Psychiatric Association published a study concluding that, “low barometric pressure is associated with an increase in impulsive behaviours.”

It seems to be magnified in children who already struggle with impulsivity or behavior issues. On a forum called Healthboards.com, a teacher that works at a Jr. High school noted that it has a big impact on the behavior of her students (especially the 7th graders). Students who have a tendency to be impulsive or hyperactive are particularly impacted. Another parent stated that their 7 year old (PDD-NOS) has always been sensitive to this, noticing a correlation between his moods, behaviors, aches and pains and the pressure in the air. You can read their specific comments here.

Tips for Weather-Related Autism Behaviors

Expect increased calls or issues during bad weather and low pressure systems. If you are responding to a call involving someone with autism, increased aggression, anxiety, impulsive behaviors and sensory issues may occur.

It is especially important to try and reduce sensory triggers and keep the environment as calm as possible. Even a small effort to district with a tactile object (such as a piece of gum or a slinky) may help de-escalate someone in a meltdown.

Be prepared to wait it out. Once you know there’s a reason for the behavior, it’s generally easier to get through it. The storm will pass, in more ways than one. Let’s hope Atlanta’s rain will do the same!

image courtesy of freedigitalphotos.net

Emergency Responders: Why Address Sensory Issues First?

image courtesy of freedigitalphotos.net

image courtesy of freedigitalphotos.net

Sensory Processing issues play a bigger role in the daily lives of those with Autism and Asperger’s than most people realize. No matter what behavior I’m addressing with my son or what I encounter on a call, I always start with reducing sensory triggers.

Years, ago, when I finally had a firm understanding of this why this works, I perpetually tried to explain it to the other adults, teachers, caretakers, and yes, even physicians in my son’s life, who insisted that my child needed to be medicated for hyperactive and impulsive behavior.

I remember waiting months to see a highly acclaimed pediatric neurologist before my son was officially diagnosed with Autism. He was four at the time. At our long-awaited appointment, we were in the waiting room for an hour and then the doctor’s office waiting for yet another hour. What four-year-old would NOT be climbing up the walls at that point?

The doctor came in and promptly spent 10 minutes with us.

“Write your name, son.”

“Stand on one foot and hop.”

“Copy this drawing of a tree.”

“Ma’am, your son has ADHD, fine motor dyspraxia, ODD (Oppositional Defiant Disorder), and maybe some sensory stuff going on. Here’s your prescription for Adderall. See you in six months.”

Whoa… wha? Oppositional DEFIANT Disorder? He was FOUR! When my daughter was four I practically wanted to SELL her. (Kidding. Mostly.) Of COURSE he was hyper – we just waited TWO hours in a closed room to see this man. And what’s with the meds? No explanation of any of these “disorders”? No constructive suggestions? No support or help?

Nope.

I researched all of the labels that supposedly defined my baby boy. Yes, he was hyperactive, but the first one that really grabbed my attention was Sensory Processing Disorder. I went through checklist upon checklist and instantly started understanding my son and the world he lives in. Many of his “quirks” were a direct stress-response to how he interprets all the sensory input from his day-to-day environment.

I soon had an entire sensory evaluation done (I say “soon,” it was actually another nine-month waiting list), and then I learned so much more about how my son experiences the world around him, and how physically painful it could be.

Once I started to differentiate between “My body hurts, I’m exploding inside and need help” and “I’m being a boy and testing my boundaries” my whole world changed, and so did my son’s.

What Does This Have To Do With Responding To Calls?

I’m a big fan of Asperger Experts – two adults with Asperger’s Syndrome that have navigated their way through the roughest times of childhood and adolescence and are now helping parents and educators do the same.

They published a video called, “The Sensory Funnel.” Although they are primarily speaking to parents and therapists (or those themselves that have Asperger’s), the scientific explanation about what’s going on is invaluable. You get to hear an adult’s first-hand experience of what the world feels like and how he not only learned to cope with all his struggles but to thrive in spite of them.

For us as responders, I chose this video for you to see as an “abbreviated” plan on scene – an explanation of why it’s imperative to deal with the sensory triggers first. The video also illustrates why trying to go from the top of the funnel down will most likely not get results, especially when trying to gain compliance or diffuse a situation.

Let me know what you think!